Women make up majority of Canadians with Alzheimer's; most caregivers also female

Sheryl Ubelacker

Rev. Faye Forbes is seen at Saint Francis by the Lake Anglican Church in Lower Sackville, N.S. on Friday, Jan. 9, 2015. Forbes has early-onset Alzheimer's disease, the most common form of dementia. Women, like Forbes, represent 72 per cent of Canadians living with Alzheimer's disease, according to the Alzheimer Society of Canada.

Image Credit: THE CANADIAN PRESS/Andrew Vaughan

January 13, 2015 - 7:00 AM

TORONTO - In the new film "Still Alice," Julianne Moore plays a linguistics professor in the prime of her professional and personal life who is diagnosed with Alzheimer's disease after she begins forgetting words, misplacing items around the house and getting lost while out jogging.

The film underscores what is perhaps a little-known fact: almost three-quarters of the almost 750,000 Canadians with Alzheimer's are women. It's not that women have a greater risk for the disease than men — they don't. But because females tend to live longer on average, a higher proportion end up developing the progressive degenerative brain disorder.

Still, advancing age isn't the only factor. The film's main character, Alice Howland, develops a rare genetic type of Alzheimer's not long after turning 50. And such cases of early-onset dementia appear to be on the rise.

Rev. Faye Forbes of Halifax was stunned to learn four years ago that the memory lapses and apathy she began experiencing in her late 50s were likely the result of Alzheimer's.

"When the shock was over, the pieces started fitting together," says the Anglican priest, now 62.

About four years prior to her diagnosis, Forbes noticed she was becoming forgetful: going upstairs in her home for something, then not being able to remember what she'd been after. She started misplacing objects and couldn't find them; she lost interest in activities she'd always loved — working in her garden, knitting, making crafts and cooking.

Reading also became difficult as she would miss words, sometimes entire sentences, and couldn't recall what she had just read.

Her doctor diagnosed her with depression, linked to the stress of attending seminary. For two years, she was prescribed different antidepressants, but her symptoms persisted.

"In the meantime, my cognitive skills went downhill, the apathy grew worse. I just wanted to cocoon myself in one room and stay there. I didn't want to do anything. I didn't want to interact with people anymore," says Forbes, who had previously been an extroverted people-person.

"Just doing everyday things like going to the grocery store was confusing," she says, describing her mind as being in a constant fog.

Eventually a psychiatrist ruled out depression and suggested she might be suffering from early-onset Alzheimer's, a diagnosis confirmed by a neurologist. She was started on a medication aimed at easing her symptoms, though it can't cure the disease.

"The fog in my head lifted and I was able to resume a different life — but a normal life," says Forbes, who helps conduct services and bible studies part-time at St. Francis by the Lakes Anglican Church. "That was one of God's blessings."

Still, she's aware she will lose herself bit by bit as the disease relentlessly destroys her brain.

"I'm not concerned for myself. I'm a very positive person, so I look at the best that each day has to offer," says Forbes, who shares a house with the middle of her three daughters. "What hurts me the most about it is what it will eventually do to my family.

"This disease does not affect just the person who's diagnosed. It affects every person in that person's life, especially their families."

And often it is a woman in the family who ends up caring for a loved one with dementia, says the Alzheimer Society of Canada. Not only do women comprise 72 per cent of Canadians with Alzheimer's, but 70 per cent of caregivers are also female.

"Alzheimer's disease is really a woman's issue," says Mimi Lowi-Young, CEO of the Alzheimer Society, which has launched an awareness campaign to alert this vulnerable segment of the population to the 10 warning signs of the disease.

"What we have to understand also is that Alzheimer's disease and (other forms of) dementia aren't part of normal aging, and we are seeing younger people getting the disease and there's a large number of women in that category with early-onset," says Lowi-Young.

"You can imagine somebody at 48, at the height of their life, with children and career, on average, and all of a sudden their lives come to a grinding halt because they've been diagnosed with early-onset dementia. And the disease tends to progress quite quickly" compared with age-related dementia, she says.

For Mary Beth Wighton, the signs were there, but she didn't recognize their significance.

"My disposition changed. I grew up trained how to be businesslike. I started to fight with my staff. I yelled. I became unprofessional and that is out of character for me," says Wighton, who owned an engineer-recruiting company with her romantic partner Dawn Baxter and a male business associate.

"I didn't see it," she says, explaining that her aggressive behaviour began alienating staff. The former dot-com industry employee also found herself unable to keep on top of the company's finances.

Wighton, now 48, took a leave from work after sinking into a deep depression. She never went back, and the company eventually folded.

But when the depression lifted, her cognition hadn't recovered: she would struggle to recall her four-digit bank card number and couldn't remember recipe directions moments after reading them.

Three years ago, a psychiatrist Wighton consulted attributed her symptoms to probable frontotemporal dementia, or FTD, the same disease that struck former Alberta premier Ralph Klein, who died two years ago at 70.

The physician told Wighton she could no longer drive and handed her and Baxter a pamphlet explaining the disease, with the advice to "get her affairs in order." The stunned couple drove to their Southampton, Ont., home with Baxter now at the wheel.

"I was 39 and she was 45. You're thinking about saving for retirement," says Baxter. "You're kind of left in limbo."

"I remember going home and us lying on the (sectional) couch head to head. I wanted to hold her hand because I was afraid she was going to pass away through the night," she says, her voice breaking. "It was terrible. We had all of these questions and none of the answers."

Baxter contacted the Alzheimer Society, which helped get Wighton into a support group and opened the door to involvement in the dementia community. Medication helps control her symptoms, especially aggressiveness.

"I was fortunate enough to get involved immediately with people who believed that people with dementia have a lot to offer, and not to stick them in a corner," says Wighton, whose philosophy is to live each day to the fullest.

Baxter admits that watching her partner's disease progress can be emotionally wrenching, and she is "terrified" knowing what the future holds. "Every day, I see a little something. She makes coffee and she forgets to put the water in or the grounds. Or something that shouldn't be in the freezer is in the freezer.

"You just live one day at a time and you've got to make sure you're laughing and enjoying each other's company," she says. "And you have to remember it's not your spouse, it's the disease."

"You have to live in the moment. I don't live in the tomorrows. I don't get caught up in the what ifs."

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